Long Term Hospitalization: Part Two of an Interview with author Janet Callahan

Janet Callahan is a Pagan author, lecturer, and workshop leader. She’s published many articles and posts across the internet. She has an essay in the book Manifesting Prosperity: A Wealth Magic Anthology published by Immanion Press, and edited by Taylor Ellwood. She currently writes two blogs: janetcallahan.com and Our Little Acorn: A Pagan mama with a medically fragile kid, just trying to figure out how to make it one day at a time. ourlittleacorn.blogspot.com/

Janet is currently in the hospital on bed rest during her second pregnancy. I wish her and her family health and well being.

Masery: Janet, how far along are you in your second pregnancy?

Janet: May 17 will be 27 weeks. My first child, Acorn, was born at 27 weeks, 1 day, so we’re all hoping to get farther than that. That will also be my 23rd day here in the hospital.

Masery: Why did your doctor suggest bed rest?

Janet: Largely because of my blood pressure, which over the course of a week went from 114/72 to 196/124. With a history of atypical preeclampsia & HELLP (a syndrome related to preeclampsia, including low platelets, elevated liver enzymes, and hemolysis, the destruction of red blood cells) for me, and IUGR (intrauterine growth restriction – poor blood flow through the placenta and umbilical cord, causing baby to basically be malnourished and not grow enough) for Acorn, they’ve been monitoring closely all along. We knew going into this pregnancy that there was a risk, and felt that it was known and controlled – and we were hoping that things would go better than with Acorn.

Masery: Why was a hospital instead of home suggested?

Janet: Within the first 3-4 days of bedrest, I’d already needed 3 changes to my medication dosage. We were still hopeful I could go home, but another round of creeping blood pressure maxed out the first medication, and at that point no one was comfortable letting me go home with things so unstable. We’ve since added another medication, which is also nearly at its maximum dose, but it’s now been more than a week and a half without an adjustment. We’re now tweaking the mix between the two meds, since the first causes me some side effects and doesn’t seem to work as well as the second.

Additionally, this way they can keep a close eye on baby Leaf – we monitor heart rate (and variations in the heart rate) several times a day, and we go down to ultrasound for an in-depth check several times a week. They will measure growth every 3rd week, assuming we manage to get that far. So far, Leaf at 24 weeks was bigger than Acorn at 27 weeks – Acorn was more than 2 weeks behind on growth, and Leaf is running a little above average for gestational age, which is a good sign, all things considered, because it means Leaf is much healthier, and doesn’t have IUGR.

Masery: What is your daily medical routine like?

Janet: The day starts at 6 am (though I often go back to sleep after the first round of checks until breakfast) – Blood pressure is checked, the senior resident makes his or her rounds to make sure no one has had anything crazy pop up in the 6 hours since last check, and about every other day, someone from the lab stops by to take blood for lab work, watching platelets and liver enzymes. Sometime between 7:00 and 7:30, breakfast arrives.

At 8, it’s time for another blood pressure check, and meds (my blood pressure meds that are 3x a day, plus my typical morning meds). Usually we try to get Leaf on the fetal monitor sometime around 9, but if it’s an ultrasound day, those are usually around 9 as well, and I get to ride on a stretcher down there to do that first, then do the monitoring when I get
back. We have to get a half hour of clean heart tones, and sometimes that’s a challenge if Leaf doesn’t want to cooperate, and then it takes longer, though we tend to have better results in the mornings anyway. Usually, sometime between 10 & 11, I manage to get through all that and get a shower – I really need to get rid of the layer of ultrasound gel, and it’s a good time to stop and collect my thoughts.

Mornings are so hectic – for “resting” I seem to do a lot of things before lunch.

Lunch arrives at noon, as does another round of blood pressure checks and medication #2 (this one is once a day). I frequently end up napping sometime in the afternoon – my meds made me very sleepy, and sometimes it’s not by choice, but that I simply fall asleep mid-whatever. There’s another blood pressure check at 4, with blood pressure meds and a snack (I
have to take those with food). Dinner arrives around 5.

At 8, there’s another blood pressure check. Sometime around 9 we go back on the fetal monitor – Leaf is not nearly so cooperative in the evenings, and sometimes this round takes an hour or two (or more). At 10 I get my normal evening meds. At 11:30, I have another snack, and then another blood pressure check so I can have my last round of blood pressure meds at
midnight. Then it’s off to bed.

That’s a “typical” day, assuming no crazy blood pressure spikes and nothing really unusual in the monitoring.

Masery: I’ve been hospitalized over night several times. My longest stay was one month after major surgery on both of my ankles. The procedure was an epiphyseal arrest which is a premature interruption of longitudinal growth of bone by fusion of the epiphysis and diaphysis. Besides the constant pain, the hardest part was being confined to bed, bored, and in unfamiliar
surroundings. What has been the most difficult part about your stay?

Janet: I think the 2 biggest things have been the uncertainty and the isolation.

Uncertainty is a problem, largely because I’m one of those people who *needs* a plan. I spent the first 10 days with my regular OB team and my high risk OB team arguing about whether or not they were sending me home. Now that that’s been decided, we wait – as one high risk OB put it, “you sit here until something happens that says you can’t wait any longer, and
we deliver the baby. Maybe this week, maybe this month, maybe next month, we just don’t know.” Besides my first day in labor & delivery while they tried to stabilize things, I’ve been back twice – and every time we go, there’s a risk that this will be “the day,” when things can’t be stabilized, or when Leaf is clearly in distress and in either case, it’ll be time to head to surgery, whether any of us are ready or not.

Isolation – well, it’s not like Barry can take off work for the next however many weeks to sit here. Most days he gets up here for a little bit, and a couple days a week, a friend who Acorn is comfortable with (and who is trained to deal with his trach) stays with him so Barry can stay longer. Our wedding anniversary is this week, and we happen to have nursing coverage the whole evening, so Barry is going to bring some non-hospital food for dinner.

A small number of friends have made efforts to visit, but most want me to plan out when they’re going to come, and really, it’d be better if they just showed up. It’s hard to keep track of days & times here, and hard for me to make plans more than a day or two out, given the possibility for things to come apart.

The first week, we didn’t even bring Acorn up here, given the instability in the situation, and Acorn’s anxiety about medical situations. This room is pretty clean of medical stuff, so it’s not horrible for him, but he knows the hospital, and is very uncomfortable here. The second week, he had a scope of his airway done, and I didn’t get to go down to be with him
because my blood pressure was up that morning; Barry brought him up after the folks in recovery said he could go home, even though he wasn’t awake. The original plan was to take his trach out after that scope; coincidentally the doctor decided to wait for any irritation from the scope to go away, so I won’t have to miss that.

Masery: What are you doing to remain connected to your spirit?

Janet: First, I’m trying to build in a lot of meditation time – after all, I have plenty of time to sit, even if I do fall asleep pretty regularly while meditating.

Second, I’ve started putting together a small altar. Since we’re fairly sure that Leaf will spend some time in the NICU, the intent is to have things organized (and have someone else gather them) so that we can move the whole thing up to Leaf’s bedside shelf in the NICU. It’s something we intended to do for Acorn, but were somewhat afraid of doing, so it never
got done. This time…this time we know a lot more about the NICU, and about many of the people involved, and about the things that can go wrong or right, and we’re a lot more comfortable with the whole situation.

I’m also trying to get some writing done on projects I have in the works – things that I don’t otherwise have time for most of the time.

Masery: Do you have any advice to share for other women who may find themselves in a similar situation?

Janet: Bed rest sucks, but a long stay in the NICU sucks more (trust me on this – Acorn spent 291 days in the NICU – that’s longer than a typical full term pregnancy). Every day is important – every day is worth staying in bed. Every day that you can put off delivery lowers the chances of disability and death; it lowers the risk of infection in the NICU, lowers the risk of long term breathing issues, lowers the risks that normal illnesses will pose to your child in the next few years. There are studies now that link autism and ADHD to premature birth, even if baby is only a couple of weeks early.

As with many things, it’s easy to think you’re alone – that no one has ever done this before, and certainly not anyone who shares your beliefs. But it’s not true – it just sometimes takes a little longer to find those people.

Find things to do to keep yourself busy. Invite friends or family to come and sit with you – just remember they may not know to suggest it, or know what things you might want them to bring, so you may have to be very specific about what you need.

Also, we pay doctors for a service – just like plumbers, mechanics, housecleaning services, and the neighbor kid who mows the lawn. It is always your right to ask for explanations of what doctors are doing, what the plan is, what tests they’re running, and what the results mean. If there’s a problem with a nurse, it’s completely within your rights to ask the charge nurse to find you someone else (and yes, it’s intimidating to do, but well worth the peace of mind not to have to deal with someone who you can’t work with day after day.

Janet is blogging about her experience at ourlittleacorn.blogspot.com/